‘COVID-hiding’: In Charlotte, why aren’t we talking about our symptoms more?

My name is Jillian Longsworth. I’m a Charlotte resident, a mother, a business owner — and I have COVID-19. I am a young, healthy individual whose business is in the fitness and wellness industry.

I was speaking to a friend the other day about COVID and my personal experience of contracting the virus along with my daughter. She told me she has several family members and friends who have contracted the virus: one passed away, one — a frontline worker — ended up in ICU, and others experienced mild to severe symptoms.

We wondered why more friends and acquaintances are not sharing their experiences on social media platforms or within the community.

We share everything else there.

Why are we not learning from each other about how the virus has spread and the effects it has had on the body post-recovery? Why are people in what I like to call “COVID hiding”? The word shame or guilt tends to come up when I speak to those that have made it through COVID. Why are we afraid to share, learn and grow from having a similar experience? I found myself scouring the internet, not for the latest sound bites about COVID, but for real-life experiences, and I found there was very little being shared.

I also found that support groups sharing the most information regarding symptoms were based out of the UK or other European countries. There are a few in the U.S., but not as many. Why is it so difficult to find people right here within my community that have had COVID?

I wanted to know more. I needed to know more. I wondered why symptoms were so different for everyone and timelines for recovery were all over the place. I decided to post my experience on social media, and now here in CharlotteFive. Here’s my experience:

As of this writing, I am now 22 days into my positive COVID diagnosis. I had mild symptoms a few days before being tested. My symptoms included numbing in my toes (not just one toe — all 10 toes), loss of taste and smell, low-grade fever for two days, tightness in my chest, nasal congestion, chills, a burning sensation in my legs on night three and crushing headaches for days. Like any viral infection, it takes time to “heal,” but I have had enough viral infections in my life to know this one feels different.

The fatigue is real, folks. The tightness in my chest shows up every other day. About 10% of my taste and smell has come back as of today, but who knows if it will improve. I have spoken to people who still have zero taste or smell four months into this pandemic. I tasted a tortilla chip the other day, and it felt like I had won the lottery. I wonder daily if the damage this virus has done will allow for my foodie self to experience and savor a good cup of coffee again or to smell my daughter while she snuggles next to me.

Dismissal of symptoms

Something else I have experienced is how people like to deflect or dismiss lingering symptoms post-recovery. For instance, everyone likes to reassure me that my taste and smell will recover in time. This is almost always from someone who has never had the bizarre experience of losing those two very important senses. I am not sure people think about how smell and taste play important roles in feeling “safe.”

If my chest is tight, they are quick to talk about air quality or allergies.

If I have a racing heart, it must be anxiety versus the virus attacking or damaging the heart.

The fatigue I am feeling must be from “all that lying around” I was doing for days.

I feel fortunate that I work with people who have chronic illness/pain while teaching yoga at the VA and at my studio, as it has taught me a great deal about listening and becoming more in tune with my own body and nervous system.

Now, for the silver lining — and there is one. Without taste or smell, my other senses are extremely heightened. When I listen to music, I feel far more beauty and emotional connection. My sense of touch is also heightened — physically and emotionally. I tend to hold my daughter for just a few moments more. I have become more present in this life versus always looking ahead.

The anxiety that comes with COVID

Speaking of the nervous system, anxiety has played a huge role in my recovery. We are now learning daily about how this virus affects the nervous system, heart and brain. When my heart rate shot up one day, causing me to feel dizzy and break into a cold sweat while doing dishes, which I typically do to find some zen, I knew I was experiencing a new symptom.

As a parent, there is the added stress of knowing kids show little to no symptoms but may show symptoms 3 weeks after testing positive. It feels like a coin toss into the abyss. I am getting little sleep these days, as I am worried that my daughter will show symptoms out of the blue. Again, people are quick to say: “Don’t worry, kids aren’t really affected.”

I don’t believe that “talking point” for one minute.

I am a mother whose child tested positive, and I am hyper-aware that we are in a pandemic with a virus that will take years to understand. I watch her like a hawk when she sleeps and every morning, I ask if she is feeling good. She thinks I am overreacting and tells me to chill.

I guess what I am trying to say is: This virus is tricky. It likes to hang around like an unwanted house guest, and I can tell you that even though my symptoms are/were mild, there are still lingering effects, mental and physical.

Where did you get it?

Let’s get this part out of the way: I am not 100% certain where I contracted COVID. I had a week where I used public restrooms in a few spaces. I had face coverings — in one instance I used a gaiter, which research now says is not effective.

I have been asked repeatedly where I contracted COVID. I don’t feel this is the best question to ask. I understand it can be immensely useful to determine but in the normal course of life, it is hard to account for every possible circumstance where I may have contracted this disease. Now that I have it, I find sharing the experience to be of immense help to me. My advice is to stop asking how we got COVID and start listening and sharing.

But most people recover, right?

I keep seeing posts about this virus having a 99% recovery rate. I find that talking point dismissive and outdated — yes — outdated. We now know there are multiple after-effects from this virus, including prolonged shortness of breath, PTSD, depression, heart damage, brain fog and the list goes on. These symptoms are not just affecting people that had severe cases but also people with mild/moderate symptoms such as myself.

I am considered a healthy 41-year-old with a “strong” immune system. No one is “immune” to this virus, and there is still so much more to learn.

The fact is, we need to be proactive in helping out our neighbors and community by wearing masks.

COVID-19 is new, and the science changes daily. We are a society that wants immediate gratification, and we want answers now — even only 6 months in. I understand people are craving normalcy and getting back to their lives, work and friends, and with that, we have to be patient.

Science takes time and constant research. In the words of my 8-year-old, “chill” and let’s allow for those on the front lines and scientists to keep doing their jobs in order for us to have the answers at some point.

Keep sharing. Keep listening. And, please, wear a mask.

Now you know my story. We’d love to hear yours. If you’ve had COVID-19 and you have ties to Charlotte, email us at charlottefive@charlottefive.com and tell us your experience.